Saturday 5 July 2008
This has been a remarkable week. The Scotsman ran a great piece on WobblyWilliams.com on Tuesday, it was amazing seeing my story in print. I bought the paper with some trepidation wondering how I would come across and what the reaction would be. In the end, not surprisingly, it was very positive. The website has gone berserk with 1000 hits in the first five days of the month.
Since the Scotsman article, I have spoken to two other journalists who looked at different angles on the same story. Hopefully these papers should print their stories this week.
My mood has been driven this week by a book I have been reading; Monkeys In The Middle by Nick Nelson. This book tells the story of GDNF, a drug which showed amazing results in early stage human trials but which was pulled by the patent holders Amgen because of adverse reactions in monkeys. The more I read about this drug the more convinced I am it is possibly an answer to the Parkinson’s problem. Maybe not a cure but at least a way of living a normal life. Given that I am new to this Parkie life this may sound naïve and a trifle optimistic, however, as I said earlier in this blog, I deal in facts and the facts give great cause for optimism.
As things stand at the moment all my issues are right sided and I spend an significant amount of time studying my left hand searching for issues. The concern is not helped by the left arm feeling tired, probably caused by using the left arm more to compensate for the decline of my right. Anyway, I thought the left arm had started this week as there was a noticeable vibration running through it. My heart sank, it was an awful feeling. I then realised my whole desk was vibrating due to the fan sitting on it. Was I relieved or what??? I dread the day that there is nothing to blame it on.
My American chum Rich gave me some golf balls back in May with his club logo on them. I was using one this week when I was playing with Ian Kilpatrick and he nearly fell over laughing. He thought they were special Parkie balls. Rich’s club in Ohio is called Shaker.
Monday 14 July 2008
This week’s media excitement was a two page spread in Glasgow’s Evening Times on Wednesday. The article was very moving for me, particularly as it featured photos of Vicky and the girls, and lots of emotionally charged quotes, some of which I said. Joking aside it was a great article and a good reflection of my predicament and how I am dealing with it. Another smaller piece ran in Business 7 on Friday, a free weekly business paper distributed through Central Scotland. This exposure has led to me being asked to submit a piece for a national paper. ME!!! I feel so out of my depth.
Vicky was working all weekend so I took the girls to Ireland to see my family. Apart from Beka puking over my trousers on the crossing, we had a great time, the girls relished not having to wash their faces or brush their hair. I must confess, however, as I sit on the ferry back to Scotland, they do look a bit rough after two days with me. On Sunday afternoon we went to Carrickfergus Castle. There was an archery demonstration and I had a go. When I pulled the string/wire back (there has to be a technical term) with my right hand, my arm started to shake. The instructor said “that wobble is because you are not used to it”. I resisted replying “Actually, my good fellow, it is because I have a progressive, neurological disorder”. It would have been wasted on him.
This is the busiest time of my working year and I have let my level of exercise slip. This was apparent in a 5k race on Wednesday night at Glasgow Green. I laboured my way round and filled me with fear as there is a good number of races and a 93 mile walk in the next 9 weeks, need to pull the finger out. Alan and I have put together an itinerary of races to build up to the Great north run half marathon in October. Our criteria for choosing a race to is nothing to do with suitability to our half marathon preparations but whether or not you get a medal for finishing. I have two so far and reckon I can blag another five before the year is out. The girls believe I get the medals for winning the races, I am vague in my responses.
Monday 21 July 2008
I see the neurologist every six months at the Movement Disorder Clinic in the Southern General. I first attended the clinic in January, and I went again on Friday, it was my second appointment since diagnosis. Prior to the appointment I was pretty worried, the single biggest worry I have revolves around progression of the disease and I have no idea whether I am progressing (declining) quickly or slowly. I can’t compare myself to other Parkies because everyone is at a different stage to me and most of them are on meds which mask their symptoms. My fear is that I am progressing quickly and I was worried that the neurologist would confirm that.
First up I saw the clinic nurse, she did all the movement tests: rotating my joints to check for stiffness, pushing me over to check my balance, watching me open and close my fists etc. In the end the verdict was everything was pretty mild. This pleased me no end.
I then saw Donald Grosset, husband of Katherine who I saw at my first appointment earlier in the year. He was excellent, we primarily discussed my medication and my departure from the prescribed schedule of building up the dosage to a slower increase. I also expressed my interest in getting involved in trials for new drugs and treatments.
The same day was a wonky clothes day at work to raise money for Parkinson’s research. I didn’t get involved because I am pretty sure I wouldn’t have got out of the Southern General if I had walked in with my jeans on inside out and my pullover on back to front.
The beginning of the week was spent writing an article for the Guardian. They are looking for a piece on working with Parkinson’s for the cover of their Work supplement on Saturday. Writing the article was an all-consuming experience, I could think about nothing else for three days. I wrote it in a similar style to this blog and I am pretty pleased with the finished article. Unless I get bumped by something of greater significance the article should be in this Saturday’s Guardian (26 July). I have struggled to think of what exactly would be of sufficient significance to warrant me getting the boot. Nuclear war perhaps? The end of civilisation? It has to be said a few of my old teachers would suggest that Bryn Williams being published in The Guardian was, in itself, an indication of the end of civilisation.
Whilst crawling around our basement looking for the wife’s engagement ring, I found my dartboard. “Brilliant” I thought. I put it up in the carport and set about chucking darts at it with my defective hand. The dartboard will be returning to the cellar shortly. There are some games Parkies just aren’t meant to play!
Thursday 24 July 2008
I received an email a week or two ago from a friend I have been very close to for about 20 years. It made me think about what has happened to me and how I am dealing with it. Anyway I think it is worth posting (with my friend’s permission) as it is a good indicator of the concerns of someone who knows me well and my state of mind at the moment.
It was good to meet up on Sunday. I was thinking on the way home and I hope you don’t mind me sharing my thoughts.
As I have said before I think what you are doing with WobblyWilliams.com is fantastic but I am also concerned that it is putting a lot of pressure on you. Not just from the amount of effort to keep the website up to date and keep the momentum on fundraising and awareness.
But also from having to always put a smile on, keep up appearances etc. This must be very hard for you, particularly at quiet times or after an event when you are left alone and are the one left with PD.
Maybe I am wrong, but I don’t think I am. There is nothing I can think of to help, but if there is please let me know. I can let you know that although I may laugh and joke about it all I do understand that is a total bastard and you are often in my thoughts and prayers.
Please keep up the good work but always put yourself and your family first. You have done a huge amount in the last 6 months, just don’t over do it
Thanks for the email, it was very much appreciated. At the moment I am feeling the pressure, the website etc is a lot of work, but it keeps me busy and stops me thinking about it. I have often dismissed the alcoholics mantra of taking it one day at a time as being impractical. But now I see where they are coming from. It doesn’t help to look too far ahead and as long as I don’t I am fine. I truly am enjoying myself and the smile on my face is genuine. I appreciate the damage it may be doing to my family but I am aware of that now (NY was a wake up call) and I have stepped back a bit.
I am realistic enough to realise there will be days that the dark side engulfs me but as long as I keep my eye on the ball that period will be a few years away. I am in good shape and the meds aren’t having an effect yet so I still have the benefits they will bring to enjoy.
You have to retain hope buddy and as long as I have that then I will be fine. I do seriously believe that the one of the two great hopes, GDNF and gene therapy, will deliver me a future worth having.
Believe it or not my life is much more rewarding than it has been for years. Much more frightening too mind you!
To help? Just do what you are doing.
Monday 28 July 2008
At my appointment with Dr Grosset we discussed upping my meds from 3mg per day to nearer 9mg (the alleged therapeutic dose). We decided to increase the daily dose by 1mg each Saturday for the next six weeks. Tell you what, the first increase on Saturday 19 September floored me. I got up, had brekkie, took the tablet and within 30 mins I thought my number was up. Hot flushes, nausea and an intolerance to little girls wanting to play with their Dad resulted in me returning to my scratcher. After about an hour it vanished.
Parkies who are on these drugs, to a man, recommend domperidone, an anti-sickness drug. I used this with the tablet on Sunday and it is amazing. I am positively looking forward to my next hangover so I can give it a whirl. I still feel a bit queasy but it is short-lived. I added another 1mg Saturday just passed without consequence. Domperidone is now my drug of choice.
My running buddy Alan is in Uganda so I have been out with Bob, he hax signed up for the Great North Run to bring us up to 7 runners. We have been out for three runs this week, and first time out he was just too fast! He will do me an injury. By the third run however I had managed to beat this speed out of him and he was running at my pace, one at which the midges can keep up.
I met up with another man’s wife this week for a chat (is there no end to the perks this condition brings?). The man in question has been diagnosed for a few weeks and his wife read the piece in the Evening Times last week and got in touch. It brought back a lot of the emotion I felt when I was diagnosed and really brought home to me how far I have travelled. It was good meeting someone else who has been touched by this illness, having a support network is vital for keeping a lid on things and the more people in it the better.
Saturday’s Guardian article was a very satisfying moment. As I posted on PDUK on Saturday night “The whole situation is all a bit peculiar for me, the education system branded me a failure in all things creative (failed both English Literature and Language O-levels!). I have always been more comfortable in the world of maths, science and facts. To discover that I might actually be able to write coherently is a complete revelation, and one I would probably never discovered had it not been for PD.” In last Monday’s blog I posted that my school teachers would see the Guardian article as the end of civilisation. My maths teacher, Jane Irvine, gave me a laugh with her comment on the JustGiving page “Civilisation has ended. U ware a grate pewpil.”
The Guardian article, this blog and WobblyWilliams.com in general are intended to provide information in a positive way about PD, but I often wonder is what I am doing counterproductive to my goal of advancing a cure? If people viewing my activities think that Parkinson’s disease isn’t serious then the awareness we are raising isn’t going to result in other people, people with and without PD, being motivated to do what they can to advance the “cause” (good Northern Irish expression). I discussed this subject with Tom Isaacs of the Cure Parkinson’s Trust and he agreed it was a difficult balancing act. His view is the use of humour helps other people understand that I know I have a problem but I am dealing with it and there is no need to feel pity for me. This is true. So please understand this is serious but don’t feel sorry for me because I don’t, particularly as I am off to Majorca tomorrow for two weeks!
Wednesday 13 August 2008
It was a very different holiday to the one I expected. I switched off from work completely but could not switch off from what has happened over the last year. My symptoms didn’t really ease off as I hoped they might, but then I didn’t really relax. I was also drinking a few pints of full fat coke a day and I suppose the caffeine content didn’t help. I switched to beer on day 11. I have no recollection whether this improved matters.
I kept up the exercise, much to my surprise. I went out jogging on five occasions, running 5k each time. At best I don’t mind running, at worst I have to fight a continual urge to stop and walk. But I always feel better for it.
The holiday was a good chance to measure progression of the disease. Last summer my right arm was tired continually, I took the opportunity to give it a break from writing or anything else. This year my right arm trembles more and is definitely slower but what can I not do this holiday that I could do last? Not much is the answer. The tremble makes reading trickier, also lying on my back and lifting myself up on my elbows is uncomfortable but that is it. On the other hand I can run 5k every three days which I couldn’t last summer.
One of my sisters came with her husband and they handled the continual onslaught of Ella’s questions for long periods. Her current favourite topic is how many cigarettes do you have to smoke before you get ill. For a 6 year old she has worrying thoughts. When we were away she decided she wouldn’t be too upset if I ended up in a wheelchair as I would still be her dad. That’s alright then. She doesn’t worry about what she eats however. She tucked into octopus, snails, squid tentacles and cuttlefish. I tried some but can’t say I enjoyed them much.
I increased my meds to 2mg of ropinirole 3 times a day over the holiday. I feel a marginal improvement in my right arm, not sure whether it is real or imagined.
We have now raised over £7000 and with the Great Scottish Run, the Great North Run and the Wobbly Williams Walk all taking place over the next 8 weeks we should be not far away from our 26k target once the blisters subside.
Monday 18 August 2008
It has been a strange week. One of the effects of Parkinson’s which I have never really discussed in my blog is the impact it has on your confidence. I remember when I was first diagnosed, simple tasks such as getting out of bed and into the shower felt daunting, with time my confidence recovered but it easily dips again when I am feeling anxious. I have been anxious over the last week worrying about progression of the illness, the walk in September and life in general. When this happens the confidence starts to go and things get worse.
The medication is going well. I feel as if the tablets are starting to have a positive effect as my right arm is moving more freely. At least I thought so until I was playing darts again on Friday night. I was out with a few mates at a local ex-serviceman’s club and some of the geriatric members challenged us to a games night. We played darts, domino’s and pool and I am sad to report that the geriatrics won hands down. As much as I would like to blame it on my Parkinson’s I’m afraid that would not do justice to our opponents some of whom looked like they were old enough to fought in both world wars!
I was out for a 10K run this week with Alan and Matt, and I had a chuckle when I thought that’s twelve months ago this weekend I was at Matt’s 40th birthday party and if you had said to me than that I would be out running with him twelve months later it would have caused much hilarity. Both for me and Matt! The next few weeks are going to see a number of difficult anniversaries as the end of my first year approaches. This week was the anniversary of my first appointment with the neurologist. It was on that night that I first heard the words Parkinson’s disease discussed in connection with my wobbly arm. How my life has changed since then!
Tuesday 26 August 2008
I have had a much better week, the arrangements for the Great Scottish Run and the Wobbly Williams Walk are falling into place. This is a weight off my mind!
Alan, Bob and I ran in another 10K race, this time at Strathclyde Park. My time was almost exactly the same as it was back in June; 57 mins and 51 seconds. This brought shed loads of questions to my mind because, given the amount of training I have been doing, I thought I would run quicker. Was it because the course was hillier? Should I have avoided the curry the night before? Has my health deteriorated at the same rate as my fitness has improved? Should I just jump in the lake and end it all now? As ever I came to no satisfactory conclusion and I didn’t jump in the lake. The training for the half marathon in October goes up a gear this week with our first eight mile run. I feel ill thinking about it.
Sunday was the first Wobbly Williams Music Festival in the Harbour Bar in Downings, Donegal. Five acts bands played in over a nine hour session and raised around €2000 for the Cure Parkinson’s Trust. It was organised by George Kelly, a friend of my brother Gareth. I flew over for 24 hours and I am so glad I did. So many people put in so much effort, the bands all played for free and more than 300 people put their hands in their pockets to help find a cure. I had never met any of these people before yet they went to so much trouble. It was brilliant.
The festival was also the first time I have stood up in front of an audience and said I had PD. That was quite frightening at the time, but at the end of the day (which was about 2.30 the next morning) so what? I am still me.
Tuesday 1 September 2008
It is now less than one week to the first anniversary of my diagnosis. I am pretty apprehensive about next weekend as I’m sure I will feel a lot of emotion. If I could bypass this week I probably would. We are away at the company golf tounament later in the week before returning to celebrate the anniversary by pounding round the streets of Glasgow in the Great Scottish Run. I feel as if I have come through this year fairly unscathed, I didn’t fall into a pit of despair and I have done everything I could to deal with the diagnosis as positively as possible.
However one year on the answer to the question that has plagued me since day one remains as elusive as ever; what does the future hold? I thought with a year of being the Parkie under my belt and two years having elapsed since the symptoms first appeared I be able to predict fairly accurately how long I was going to be able to operate as an able bodied and fairly normal human being. Last week’s worries about my time at the 10K have been replaced this week with worries that my left arm is starting to show signs of the disease. The arm feels tired and shakes at times, and I am trying not to panic about the whole situation. I can remember my left arm feeling like this shortly after diagnosis when I was in Paris with Eddie and it turned out to be related to the stress I was under at that time. Maybe the combination of the first anniversary, arranging the walk and the run, and organizing the company golf tournament are just getting on top of me. Time will tell.
These worries plagued me all day Saturday and, as always, I woke up on Sunday in a defiant mood. I put many of the worries to be Sunday morning by running the Paisley 10K in 56 minutes and 8 seconds. I was in great form for the rest of the day. I love doing two fingers at this illness.
Alan and I ran eight miles last Wednesday along the canal that runs through north Glasgow. There was a lot of people sitting about drinking cans of cider and to a man (and they were all men) they shouted words of encouragement. What a pleasant place this is. Suffered from serious joggers nipple when I finished. Agony.
Friday 5 September 2008
Recalling the 5th, 6th and 7th September 2007 still brings a cold feeling to my being. Even now, twelve months on, I can remember vividly the events of those days which changed my life so dramatically. I can remember on the Wednesday evening turning on my laptop to look for answers to the stiffness and tremor in my arm. I can remember the nausea rising as I read about Parkinson’s disease on Wikipedia. I can relive the sensation that overcame me when I realized I had Parkinson’s disease by just thinking about the events of that night. I can remember the fear as I read on and learned of all the horrible things that might happen to me. At the time I didn’t appreciate the word “might” and was very much convinced that the future was very black indeed.
The 48 hours which followed were horrific. I had the diagnosis confirmed and had to tell those people who I am closest to that my life, our lives, had changed for good.
I often compare what happened in those three days to an elephant entering my life. The elephant is always behind me, walking slowly. I can’t see him but I know he is there and always he always casts a shadow on me. Sometimes if I slow down he will bump into me, which is sore and worrying for the future. I can never forget about the elephant but I can joke about him, I can exercise to keep away from him and I can keep walking towards the sunshine. I don’t know how fast he is walking and I don’t know whether he will ever catch up with me. What I do know is that he will never own me.
One year on and here I am sitting in a hotel room in the Dalmahoy hotel near Edinburgh thinking about the past. It has been a remarkable year. I have met many remarkable people and we have achieved many remarkable things. The highlights of the year for me are running in the Glasgow 10K, having an article published in the Guardian, receiving a letter from Paul Sturrock and organizing a walk which will contribute to the fight to cure this disease. Another brick in the wall.
I am a much happier person than I have ever been. I laugh more, I cry more and I am looking forward to the future. To use another Northern Irish expression “No Surrender!”
Monday 8 September 2008
Yesterday was great. It was the Great Scottish Run 10k and Half Marathon and there was around 40 runners in Wobbly Williams T-shirts. To see all the Mr Jellies running past me as I bumbled along was brilliant. Before the race I was in Dalmahoy for 3 days for the company golf event, as ever it was good fun but I slept too little and drank too much. I felt it in my legs. After the race we had bacon rolls, photos for the press and watched the half marathoners home. It was brilliant. The highlight was Ella shouting at me as I crossed the finishing line, she said “you are so slow daddy”.
The focus now moves to the walk, this time next week we will be under way. Hope the weather improves!
I found a note in a diary from 2006 in which I refer to a tremble in my arm. The date was 26 October, 6 weeks before I saw a GP. So only a month to go until it will be two years since I first noticed the symptoms. My life is whizzing by.
Saturday 13 September 2008
The calm before the storm. It’s 06:30 on Saturday morning and I am enjoying the peace and contemplating what is going to happen over the next seven days. This week has been tiring and stressful. I went for a nine mile run on Wednesday night, which was fine, but left me unable to sleep as I was packed with endorphins. On Thursday morning STV got in touch to set up an appearance on the 5.30 Show on Friday evening. The plan was for them to film Vicky, me and the children in the house as an introduction piece and then interview us live on the television in the studio. I freaked. It was absolutely terrifying thought, however it was an opportunity I had to take as one of the key goals of WobblyWilliams.com is to raise awareness of Parkinson’s and here was an opportunity to discuss it live on ITV at prime time.
A sleepless night followed for both Vicky and I as we were terrified! Only to be phoned in the morning and told that the producer had decided to postpone the live appearance so that they could include footage from the walk. The reporter and a cameraman still came to the house to film us doing things that we normally do like smiling, reading books and not shouting. Another sleepless nights looms! The upshot of all that is my legs are extremely tired and sore, my right arm is shaking like a fiddlers elbow and I have to set off on 93 mile walk in 24 hours time! Brilliant!
At this stage I’m very much looking forward to the walk, the weather is lousy this morning but we are optimistic that it will pick up for the week ahead. It is going to be an amazing challenge.
Saturday 13 September 2008 (Midday)
It’s Saturday morning and it’s just dawning on me how dramatic this walk is going to be. The walk starts tomorrow, however, today I’m driving up to Fort William to drop Gareth’s mountain bikes at the finish line of the walk so he can start the cycle back next week. I am driving through Glencoe dictating this and it is truly an amazing spectacle seeing the mountains surrounding me in every direction. It is so beautiful, so wild and it is extremely inspiring. On the drive up I realised that Tarbet, about half way up Loch Lomond, was as far as I’d ever been. The road alongside Loch Lomond is an absolute death trap because you just can’t take your eyes off the scenery around you. I have been passing all the places that I’ve been researching and dreaming about for the last few months like Inverarnan, Tyndrum, Rannoch Moor and Kingshouse. My only hope is that when we come to actually walk this section of the way it’s considerably dryer and brighter! The only bit that really frightens me is Rannoch Moor it is just so bleak and it goes on indefinitely. What a great place to have a massacre.
Sunday 14 September 2008 (8.40 am)
Got back from Fort William about 2pm having had to take a massive detour because of a car which had selfishly gone on fire on the banks of Loch Lomond. People started arriving at the house from about 3pm to collect t-shirts and it was a bit of a blur. It was great to see the old faces like Darren Bundy, Eddie and John McVea as well as all the new friends we’ve made since we’ve lived in Bearsden. I was doing fine until Ella gave me a present and it was a book she had written called “My Dad’s Big Walk”. The story went like this “wuns a pon a time there was a man called Bryn. He was doing a big walk. His friends were doing it too. I am his daughter. I am proud of him. I hope he raises enough money to make him better. I am all excited. I hope he does good. Lots of love Ella.” This reduced me to a bubbling wreck and I had to retire to the bedroom to cry my eyes out for five minutes. Ella came in to see me and we both blubbed together.
Darren and Eddie left to go out for a quick pint at 9 o’clock, returning at half past three in the morning! Darren looks the worse for wear this morning. We’ve been and dropped the bags off and now all there is to do is wait until the walk starts. The weather is lovely. The rains have subsided for the first time in about a week and hopefully we’re in for a clear day. To celebrate this I put my shorts on.
Sunday 14 September 2008 (11.30 pm)
I have had just the most amazing day. Everything worked really well. We had about 72 at the start. We all met up and there was lots of photographs and we signed a big poster which Alan Kennedy prepared before we set. There was nothing for me to do, it just worked really well and everyone seemed to have such a great time.
The walk takes you along the Allander Water and up into Mugdock Country Park, the scenery was breathtaking. After Mugdock, you can see the Campsie hills and the hump of Drumgoyne and drops down to the Beech Tree Inn for lunch. What excites me is the people that have done this walk before all say the first day is particularly boring whereas I found it just stunning. I just loved it. I walked with a few people today; Bob Naismith, Dave Thorpe, David Patterson, Chris Moule, Tony Hamill and I laughed with every one of them. I felt relaxed, I felt my symptoms were unnoticeable even to me and it was brilliant. I had a few chats with another Parkie who was on the walk and I hope we can become good friends. We have a lot in common other than this illness and I hope he can become another piece in the jigsaw which helps me cope with this disease.
In the evening we all went to the Winnock Hotel and drank and ate and drank and then the guitars came out and we sang. It was a brilliant experience.
We found out during the evening that we are on Teletext and BBC Online. When we discussed what media we wanted to be on BBC Online is the pinnacle of them all because it’s a permanent record it will always be there to share what we have done and what we have achieved.
Today has left me hankering after more, which I know will happen this week, but also in years to come, which I’m not so sure about. Today has made me more determined to drive for our goals of raising awareness and finding a cure.
I am standing now looking out the window at the rain falling for the first time today. The Gods have smiled on us, or maybe it was my mum looking down. Who knows? I am looking forward to tomorrow. My feet are a bit tender but we will complete this walk and I am more determined now than ever. The girls were at the start and at the finish and Vicky walked the whole way today. It’s very defining having children when you have a disease like this because it makes it much easier to quantify what exactly it is you want to be able to do. As I’ve said on a number of occasions I want to walk my little girls down the aisle if they choose to get married and be able to make a speech at their wedding. Today has been symbolic of my defiance of this disease and my determination to achieve those modest ambitions.
Monday 15 September 2008 (10.10 pm)
That was one really difficult day. We were up and away by 10.15 and it was raining all day. The first part of the walk was very gentle through the forests around Drymen before we came to Conic Hill. The path up Conic Hill was a river and it was a very difficult climb. Unfortunately we weren’t rewarded with breathtaking views as it was so misty and wet but it was still exhilarating being up there. The descent down to Balmaha was quite frightening. Christine hurt her knee and this gave me cause for concern.
I made the mistake of having a couple of pints at lunch time thinking the afternoon was going to be a stroll to Rowardennan. This stroll was about 7 or 8 miles through undulating countryside. Occasional glimpses of the loch were very rewarding but it was a drag and progress was slow. We got to the Youth Hostel at 6.30pm and I was absolutely shattered. The hostel is pretty basic, certainly more basic than the £16 a night charge suggests, and we headed out to the Rowardennan Hotel for dinner.
At the Hotel we all sat around in a big square and the jokes were flying. At one point Ian proclaimed he was absolutely f***** and said “are you sure you have Parkinson’s? Certain there has been no mistake? Can we get a second opinion?” I rolled around laughing.
The waitress was unfriendly and unhelpful. The manager came in to apologise and explained the girl was from Edinburgh. This didn’t sound true as she was clearly foreign. He clarified by saying “well, she went to Edinburgh once and never came back the same.”
I am back in the hostel now and I am really tired. At points today I had doubts that I’d finish the walk, but now day 2 is over and we’ve covered the best part of 30 miles I’m feeling a lot more confident. I do have concerns for Saturday with so many people arriving to do the last day but with a fair wind and a spot of luck we should be okay.
Wednesday 17 September 2008 (7.15 am)
Yesterday (day 3) was a good day. I passed from being concerned that I might not finish the walk to being quite confident. It was fairly dry in the morning with the rain just falling intermittently and it made for a very pleasant walk and a bit of scrambling along the banks of Loch Lomond.
We arrived at our lunch stop, the Inversnaid Hotel, fairly quickly. The hotel is dire. It is the only place you can get food on the way on this particular day and the service reflects that. I felt I was a complete inconvenience to the staff and no thought or effort went into making us feel welcome or preparing a decent lunch.
The afternoon walk was a bit grim particularly because it was chucking it down with rain. It was slow going along the river bank scrambling up and down rocks, avoiding tree routes and trying to keep everyone together. Once you escaped the banks it was about a three or four mile walk along paths through forests and up and down hillsides. I am beginning to resemble a mountain goat as my legs are becoming more spindly and I haven’t shaved for three days.
We arrived at The Drovers Inn by about 5.30pm. In complete contrast the Inversnaid Hotel the Drover’s Inn is warm, welcoming and extremely relaxing. We got into the bar about 6 o’clock and sat there until about 11 pm chucking back whiskies, singing songs and having a good laugh. Ian found a group of French walkers to talk to, one of whom works in a hospital in Grenoble which is pioneering deep brain stimulation. I had a good chat with him and we managed to extract £20 out of them towards the fundraising target. We had another £20 from English Andy in return for sitting with us and have the piss taken out of him all evening. Although the walking is difficult the craic is tremendous.
For the first time in my life I slept in a four poster bed but unfortunately it was completely wasted as I was sharing it with my sister Christine.
My symptoms are in decline at the minute. I find the walk is all consuming in that I can only think about where my next foot step is going to go and I can’t think about work or other things which might stress me out, it’s extremely relaxing and very tiring both at the same time. Today should be relatively straight forward so I’m going to put on my spare walking boots as my main ones are soaked through and I’ll need them for the hike through Rannoch Moor tomorrow. We’ve covered over 40 miles and we’ll pass the half way point today. That will be a fantastic feeling.
Wednesday 17 September 2008 (6.10 pm)
Today was brilliant fun. The walking was fairly easy, it was 12 miles from Inverarnan to Tyndrum and it was good fun. For the first time since Sunday we had a dry day and the miles rolled in pretty quick. We are now more than half way and things are looking good. My reserve boots which I haven’t worn in anger for about three years were fine I am still a blister free zone. The girls, Gill and Fiona, however, have got whopping great blisters on their ankles and their previous enthusiasm for Compeed plasters has diminished somewhat.
The news is telling us that the world has gone into financial meltdown and right now it seems such a distant thought. We are so far from reality up here that it is the problems of another world. I’m having a brilliant time but tomorrow might be different as it is the longest day, estimates vary between 18 and 21 miles but things are good.
Friday 19 September 2008 (8.30 am)
Well, the longest day is behind us followed by the longest night! Yesterday’s marathon, which measured 21 miles on the GPS system, was pretty straightforward. We got away by 8.20 am and reached Bridge of Orchy by 11 am, and we were up and over the hill to Inveroran by 12. We had just bashed out 9 miles before lunch and it was an early lunch at that! A week ago the thought would have terrified me!
The afternoon walk up and along Rannoch Moor was harder simply because I was starting to wilt. This stretch, another 9 miles, is along a rutted and stone track and was hard on the legs and ankles but again we bashed through it in about 3 hours and arrived at the Kingshouse Hotel by about half past three. The scenery along the route was spectacular but nothing compared to the location of the Kingshouse. It just sits at the mouth of Glencoe and Glen Etive and is just breathtaking. It’s quite a quaint hotel with an elderly feel to it. However, the walkers bar is lively and we had a great afternoon and evening.
As ever the guitars came out, it was a sing-along, we talked to other walkers and there was huge relief amongst the party that we are now into the final 25 miles. We played darts, we sang songs, we cracked jokes and we went to bed. Vicky arrived and it was good seeing her again. I was very conscious that we had all been together as a group and her and Lindsay might feel left out, however worries were soon forgotten as we discussed the dawning of International Speak Like a Pirate Day (Friday) and we practiced our pirate voices and pirate phrases and worked out our pirate names (Barnacle Bryn).
Despite being absolutely shattered, I had a poor sleep again and I’ve been up since 6.30 am. I’ve had a bath and I’m sitting in a room which wouldn’t be out of place in an old people’s home. It’s cloudy today but dry. The weather has been generally fine all week other than days 2 and 3 when we had a lot of rain it has been great walking weather although it will be nice to see the sun again!
Today’s walk is a fairly short up and over to Kinlochleven. However, the upward climb is the Devil’s Staircase.
Saturday 20 September 2008 (8 am)
Yesterday was a pretty straight forward day. The Devil’s Staircase is steep but the paths are okay and the walk across the valley at the top is pretty straight forward. It was a bit disappointing that the cloud was very low and what would have been fantastic views were completely shrouded in mist but it added an eerie feel to the proceedings. The decline into Kinlochleven is pretty severe and sore on the feet, producing my first blister of the walk.
We got to the bed and breakfast about three o’clock and I spent the afternoon making some phone calls to the television people and feeling extremely tired. A good chippy and a few pints and I was ready for bed at 10 o’clock. Some of the Marks & Clerk people had arrived and the rest managed to get underway by 7.40am this morning for what will be an extremely long and difficult day. Alison and Rob have arrived and we met up with their friends Glenys and John in the pub and once the coach and cars get here we’ll have between 70 and 80 people tramping up the hill out of Kinlochleven and across the mountains to Fort William. I’m extremely tired and I’ll be glad when it’s over but I’m feeling a great sense of achievement.
Sunday 21 September 2008 (7.05 am)
It’s over! I am drained, relieved and extremely happy.
We congregated at the start of the walk at about 9.30 and sent people off as soon as they were ready. The bus from Glasgow got in at about 10.05 and by 10.30 everyone was away. The climb out of Kinlochleven is steep and dramatic, and the views of the town of the town from the top and of the valley and loch are breathtaking. Gareth, George, Bob and I stayed at the back to ensure nobody got left behind and it was a very leisurely days walking. It was good having some new people to talk to and for most of the way Jen Devlin kept me going by asking questions like “What was your best day ever at high school?” The weather let us down a bit and the walk through the valley could have been more beautiful than it was, however emerging from the forest to see Fort William an hours walk away was a great feeling and the last mile seemed to go on forever. It was a relief to cross the line.
We had photographs at the finish and then went for an after walk party in the Alexandra Hotel. The guitars came out, the sausage rolls flowed and all the whole way walkers felt pretty smug in a room full of glory hunters!
So that’s it. I’m lying looking out the hotel room across Loch Linnhe and I can safely say I’ve had one of the greatest weeks of my life. I would never have done this had I not been diagnosed with Parkinson’s and this week has been one of the many, many silver linings to the cloud which is this condition. Next year’s main walk is going to be in Ireland finishing at the Harbour Bar in Downings for the music festival. We want to get as many people walking as possible and we’re going to try a day of walks all around the world to raise awareness of this truly life changing disease.
Sunday 28 September 28, 2008
What a crap week! I have been fed up all week, such a downer after a brilliant walk. It has been a struggle this last week getting back to normality. A low mood opens the gates for the demons to pour through and as a result I spent much of the week scared for the future, a future which I have no control over (no different to anyone else reading this mind you!). It is a feeling of helplessness which I find very hard to deal with.
All that being said, I haven’t helped myself. I have taken no exercise and comfort ate all week. I went out for my first run yesterday in about 3 weeks. Bob and I ran 9 miles and, one week before the half marathon, I have two whopping blisters to show for it. There may be trouble ahead!
Gareth and George got back from their mad mountain bike back down the West Highland Way on Wednesday and we went for a curry with some of the walkers. It was a great night and made me realise just how close we had all become over the week. Gareth leaving on Thursday brought me back down again.
We went for a walk to the Whangie today, a peculiar arrangement of rocks near Drymen. Couldn’t find it. Set off from the car park, went up the hill, stood in lots of cowpats (some by accident) but no giants causeway. Obviously finding Fort William was sheer luck. It was great putting my boots on again and tramping up a hill. I had to tolerate the girls saying “feel wick daddy” when we couldn’t find it however.
We should be on ITV tomorrow night (Monday) which excites and terrifies me at the same time. This was the appearance which was cancelled before the walk. What should I wear? should I dye my hair? What if I say “feck” or worse?
Friday 3 November 2008
The ITV appearance was brilliant fun. I spent most of last weekend fretting about it but in the end it went fine. We took the girls along and they were beside themselves. When we got there we were met by Sara who showed us the studio where the grilling was to take place, it was pretty small and when they are filming the show there is only one cameraman and a floor manager. I was expecting a whole squad. We then me Rachael, one of the presenters and she was so lovely; very calming and warm. I started to relax at this point. Next we met Sean the weatherman/boy. He gave me an autograph for Katie at work who adores him. The floor manager came in and told us what would happen. Finally we went to make up to get de-shined and then we were good to go.
The girls stayed in the waiting room as we were moved into the studio. We stood behind the camera as the presenters talked about me and then they went to a segment of videotape. It was all a bit of a blur. Whilst the tape was running we were moved to the sofa and miked up. I was all fingers and thumbs. And then we were live on TV. The interview lasted four minutes and seemed to be over in an instant. I didn’t think about what I was doing, I just talked in a less colourful language than usual. When it was over we were buzzing.
We didn’t record it so I couldn’t watch it until it went online the following night. I am pretty pleased with how it went, I got the message I wanted across; Parkinson’s disease isn’t just an old persons disease and a cure is the primary goal.
With the interview done the weight of last week lifted off my shoulders. I didn’t realise how much going on TV was preying on my mind until it was behind me. I find it hard to identify what the cause is when I am under the cosh, I usually blame feeling blue on the PD, but usually that’s just a side issue.
This Sunday is the Great North Run, my first half marathon. I am apprehensive as I haven’t trained as much as I should this last fortnight, I have a cold and I don’t like running. But I am determined to run, enjoy and finish. Four of us are going down on the train with our Lucozade carry outs and bowls of couscous. What on earth I am doing going on a lads weekend to Newcastle and drinking fecking Lucozade? My change of clothes includes nipple tape and a pink vest. Where did it all go wrong?
Tuesday 7 October 2008
There is no pleasure to be had running half marathons. The Great North Run was the most difficult thing I have ever done. We were very restrained the night before, went for a pizza and drank plenty of water. Up early for a high carb breakfast and got ready – plenty of Vaseline and tape on the old nips, plasters on the blisters, pink vest. Felt great.
Wandered up to the start, the plan was to run with Richard Macmillan and we crossed the start line 20 minutes after the elite runners. The place was mobbed, brilliant atmosphere. Felt great.
The start is a 1.5 mile downhill jog to the Tyne Bridge. It was amazing just hearing the sound of thousands of feet padding the streets. Still felt great.
The info pack sent out months ago has a wee chart which shows the course, overall, is downhill. THIS IS B*LL*CKS. DO NOT BE TAKEN IN. From the Tyne Bridge the next five miles are uphill. At the end of the five miles there is a sign sponsored by Nike which says “Now for 3 miles downhill”. THIS IS ALSO B*LL*CKS. DO NOT BE TAKEN IN. The next five miles are also uphill.
It was at the Nike sign where I stopped feeling great. My right calf tightened up and my right foot started bending inwards. It was a niggle which got no worse until the 10 mile mark, it was an irritation sent to make me doubt my sanity. I got on the phone and sought out inspiration from family and friends. I was quite emotional at this point, I was amazed that I was running a half marathon. Then my right leg got worse, my foot started to cramp and my world started to be pretty unpleasant!
The first 10 miles were run at an average speed of 10 mins 30 seconds per mile. The last three were nearly 13 minutes per mile. I ran every inch. I didn’t stop once. But believe me it was close. I got a lift at 12 miles seeing Alan and the PDS team, AND FINALLY A DOWNHILL. The Red Arrows filled the sky as I ran the last mile along the South Shields strand. I didn’t enjoy that last mile at all, it seems strange to say that now, forty eight hours later – how could I not enjoy it? But I didn’t, seeing the finish come into sight about 200 metres from the finish was such a relief.
My emotion as I crossed the line was elation at having finished, disappointment at having taken 2 hours 23 mins and 47 seconds to do so and determination not to do another one! Well maybe one more. A flat one, the Amsterdam half marathon perhaps.
It is now Tuesday and I am in pain. My hips are like jelly and my legs ache. But I did it and I feel pretty pleased with myself!
Monday 13 Oct. 08
A week has passed since the half marathon and the pain has been forgotten and the memories are all good! Some of the lighter moments have come back to me. At the ten mile mark there was a Lucozade sport drinks station. The runners grabbed a carton of drink, took a slug and ditched the container. The action of ditching covered the road with a sticky mess. At this stage I needed all the help I could get and having my feet adhere to the surface was of no benefit. It was like running in glue.
After the race we went to the old Rupali in Newcastle which claims to sell the hottest curry in the world. We had a half portion between us and believe me it was hot. I managed to get away with just trying the sauce but Richard went for it and looked like he was paying the price. His backside must have been like the map at the start of Bonanza the next day.
Tom Isaacs sent me a copy of his book (Shake Well Before Use) about walking the coastline of Britain in a year, a four and a half thousand mile trek. It is a great and very inspirational read. For someone who required medication just to be able to walk at all it was a huge achievement. I am sure he sent the book because he thinks his efforts compare favourably to the Wobbly Williams team. I would point out, however, he only walked a measly 15 miles a day and had a whole day off every week, whereas we walked the West Highland Way at an average of 15.7127832 miles per day and didn’t have any breaks. Except to use the pub. So there! Tom also ran a marathon that year which on the face of it beats my half marathon, but again he took the soft option by running the London Marathon which everyone knows is downhill the whole way, whereas I undertook The Great North Uphill Run. Comparable to scaling the north face of the Eiger, in fact. Joking aside, he is a great guy and an example of someone who has taken his Parkinson’s disease by the scruff of the neck and done huge things with it.
The level of medication is an ongoing issue. I am up to 8mg per day, a smidgen below the recommended 9mg and want to hold at this level to see what happens. But I feel a bit shakier which suggested to me I should up the dose but I have been reading that too high a level of Ropinirole can make you shakier! A Parkinson’s disease drug that makes you shake! Is that a joke?? Its like selling a nicotine replacement therapy that gives you lung cancer. So do I up to 9mg or drop to 7mg? Now I have a bit of normality back I am going to compound things by asking to go on to rasagiline, the allegedly neuroprotective treatment.
Monday 20 October 2008
Why do I say such stupid things? This week I had a coffee with Jenni Wilson, a friend from my Southampton days. I used to work with her mum and tutored Jen through her GCSE Maths. Anyway I hadn’t seen her for 8 years when she pitched up at the office on Wednesday. During coffee she said:
“I want to do a run to raise funds for Parkinson’s”
“Fantastic”, I replied “what do you have in mind?”
“Next year’s New York marathon”
“Brilliant”, I said jubilantly “tell you what, I will come over and cheer you on”
“Why don’t you do it as well?” suggested Jen.
“OK”, I said.
In two weeks I had forgotten the pain of running a half marathon (admittedly uphill the whole way), a distance which I had vowed never to repeat. What a fool I am. To compound matters I volunteered all my mates and my brother without asking them, so I am now friendless. I should replace Mr Jelly on the website with one of the Muppets.
I saw a video one of the walkers had made of the Walk this week and was alarmed to see how little my arm swung as I was walking. Lack of arm swing is a classic Parkie symptom and I found it quite disturbing seeing myself as others see me.
Monday 27 October 2008
Two years ago yesterday I wrote in my diary that my arm was trembling. It is the first date I can hang my hat on. I have suffered a lack of sense of smell and taste for years (another early symptom) but for me, 26 October 2006 is the date it all started. In two years I have become a different person!
Last night was one of relief. I was approached by a local band during the summer offering to do a fundraiser. Reflector (the band) cover 70’s rock classics and play the own tracks. The fundraiser has gained momentum and is nearly a sell out, there will be two support acts and a raffle etc. However I have had this we niggle nibbling at me since the idea was raised; what if Reflector are crap? Because of this fear I have had to avoid the new series of the X-Factor for fear of seeing them at the auditions and getting slated by Simon and co. FEAR NOT. I saw them in action last night at a practice session – they are good, very good. even the girls didn’t cover their ears.
I have been a bit shaky this week and I have upped the daily dose to 9mg, the therapeutic dose, the dose which it is believed the effects of the drugs start to kick in. I want to try rasagiline, the allegedly neurologist protective drug but I want to see what effect ropinirole has on me first.
Exercising has fallen by the wayside. I haven’t done a Pilates class for months, in fact I have only been to the gym twice all summer. OK I have been running on the roads but now winter is back I need to get working on my fitness again. I am more or less committed to the NY marathon in one year and six days time and I want to be a stone lighter by then. My friends are coming round to the idea and asked a couple of more people when they were pissed on Saturday and they readily agreed. Pressganging is alive and well.
Wednesday 5 November 2008
It has been a quiet week. I can feel the meds kicking in periodically, for a few hours at a time. My arm swing is at least partially back but the improvement on reaching 9mg of the drug wasn’t as dramatic as I had hoped. Perhaps I have to be on this dose a dew weeks to get any effect.
The plans for 2009’s fund and awareness-raising efforts are underway. One of the projects is to have 50 walks happening at the same time all over the UK and the world. If we can get 20 people on each walk that will give us 1000 people out walking for Parkinson’s. If each person raise £50 in sponsorship then between us we will raise £50,000 in a single day. One of my friends called it Pyramid Walking! We have thirteen confirmed walks (see the Facebook page), and we are looking for more volunteers, feel free to email.
Next weekend sees my first physical contact with other Parkies at a get together for members of one of the Forums I am a member of. I am looking forward to it and apprehensive in equal doses. I will also get to meet Tom Isaacs for the first time after having spoken to him on many occasions. He asked me recently if I would be interested in participating in the Patient Committee assisting in organising the World Parkinson’s Congress which is held in Glasgow in 2010. I agreed only to find he has already put my name on the website!
The next fundraiser is a gig in Bearsden by a local band, Reflector. We have sold in excess of 100 tickets and it is going to sell out – cool!
Monday 10 November 2008
The weekend was fine. I was very apprehensive indeed, How symptomatic would people be? would I see myself in ten years? Everyone was very friendly and similar to the way they are on the forums. You really wouldn’t have known it was a room full of Parkies, there was very little in the way of symptoms on show, much to my relief. Tom Isaacs is an amazing guy, he is showing the effects of having had the disease for 12 years, but still faces it head on with humour and courage. He assured me I has contracted the disease at a great time, he is certain I will have it only long enough to fully appreciate how serious it is before the cure comes along. I am not sure there is ever a great time to get Parkinson’s disease but I do fully appreciate how serious it is right now so a cure anytime before Christmas would be fabulous. In his speech after the dinner he accused me of being a fraud because I wasn’t wobbly enough to warrant the name Wobbly Williams – believe me from where I am sitting I wobbly plenty enough! Vicki who writes Vicki’s Diary for the website was there too – she is indeed a riot. Anyone who drinks neat amaretto is a bit nuts in my book.
The drugs do work. They kick in for a wee while each day and my typing is good and my tremor calms down. It is an amazing feeling.
The Reflector concert is this weekend, I bought the booze tonight. Our house is an alcoholics paradise.
In the month’s Bearsden Parish Church newsletter there is an ad which says:
“The Weightwatchers class will now take place on Tuesday night at 7pm in the Church Hall. Please enter through the large double doors on the side of the building.”
I did laugh.
Monday 17 November 2008
The concert was brilliant, it was yet another great experience which being diagnosed with Parkinson’s disease has given me. As always my friends turned out which puts me in a dilemma: I am acutely aware that my friends have shelled out serious cash this last year, getting little in return and the attraction of a night like Saturday is they get entertained. But how do I find out if they enjoyed it? I don’t want people to dread getting emails from me. It is tricky.
I found out on a Parkinson’s disease Forum this week that the drugs I am on can make you shakier; the drugs reduce the stiffness in your limbs (the most disabling symptom) but less stiff limbs tremble more. This is a relief (if true) as I was putting the increased tremor down to the disease advancing not the drugs working. It is also frustrating because I upped my medication because of the increased tremor. Why is this information not coming to me from my medical team? The drug leaflet lists tremor as a side effect with no indication that it might be a positive indicator of the drugs working.
Monday 24 November 2008
If you are a sensitive Parky then don’t read this!
I am thinking a lot at the minute about how to take wobblywilliams.com forward. Deep and meaningful questions like ‘Why am I doing this?’ raise their heads. Closely followed by ‘Is it more important to raise awareness of the disease or raise funds to contribute to a cure?’. I haven’t reached any definite conclusions yet, but in my simple, little, dopamine-depleted world if people know about Parkinson’s and the effect it has on people’s lives (not just the Parky but also their family etc.) then people will demand change and the funds will flow. When I was running the Great North Uphill Run, there were supporters of the Alzheimer’s Society every mile with flags and balloons making a racket, getting on TV and sending a message to all the runners that Alzheimer’s is a big issue. For Parkinson’s there was one group of supporters at 12 miles (about 10 miles too late for me!). I accept that Alzheimer’s is a bigger issue in terms of numbers (about 4 times as many sufferers) but it isn’t 12 times bigger. And I would argue that Parkinson’s is at least as unpleasant as Alzheimer’s. Why weren’t there Parkies and supporters on every corner? 220 people ran in that race to raise funds for Parkinson’s but in total there were about a dozen people, most of them employed by the PDS, on the route cheering them on. Why? Because, in my view, awareness of the condition is low and Parkies, generally and for reasons I can’t fathom, aren’t motivated to raise awareness themselves.
The most effective tools this website attempts to use to capture readers (currently running at 14,000 per month) are optimism and humour (difficult to spot sometimes but I assure you it is there). I think humour is the best weapon in our armoury to spread knowledge of this disease and last week we sent out a joke by email to around 40 people with the footer ‘www.WobblyWilliams.com Raising Awareness of Parkinson’s’, the result was around 1000 extra hits on the website.
That’s my second rant in two weeks over. Feel free to email me and say I am talking out of my arse, but if you do PLEASE include a joke.
Tuesday 25 November 2008
Before I posted my last blog entry I sent it to The Coach (see The Professionals page) for comment and expressed the concern I was in danger of alienating my audience. Here is her response (which came too late to alter the course of history). The Coach likes the sound of her own typing so I have helpfully highlighted the key passages in red.
I don’t think you are alienating your audience – I wouldn’t even begin with “If you are a sensitive Parky then don’t read this”. I would say what you are saying, but I would perhaps delete “Parkies, generally and for reasons I can’t fathom, aren’t motivated to raise awareness themselves.” I know that this is something that frustrates you but I’m not sure it’s even true. You are intelligent enough to realise that raising awareness and raising funds are one and the same (although your question at the start about why you are doing this is confusing. why are you raising awareness if not to have people demand change and have the funds flow? If that is your reason for raising awareness then whether you are doing this more to raise funds or more to raise awareness isn’t really a question because your reason for awareness raising is to raise funds and therefore you are raising funds and raising awareness in order to raise funds all to find a cure). My (somewhat long winded!) point is that I think the reason Parkies generally aren’t motivated to raise awareness is simply that they can’t see the link between awareness raising and funds and finding a cure and living happily ever after. So rather than saying Parkies, generally and for reasons I can’t fathom, aren’t motivated to raise awareness themselves, you could use your entry to be more directional. To stress that by raising awareness is important and is the quickest route to finding a cure and to encourage (rather than berate) all those out there reading but not doing to do something. Use it to give more suggestions about how people can do more (for example, invite all those with Parkinson’s and their friends and families to add the wobblywilliams footer to their own emails, at the next event you are running in add an invite on the site for supporters to come along with their balloons and t-shirts). At the end, rather than saying your second rant is over, invite every person reading to find one thing they could do this week, however small, to raise the awareness of even just one person about Parkinson’s and to then know that their effort, however small, has made a difference.
So there you go. As always what this lovely lady says is true. I will do more inviting in future. I take her point that “that raising awareness and raising funds are one and the same” but my view is the funds follow the awareness. If I raise awareness then funds will follow. My practical concern is that I have gone to a lot of people for cash this year and those people have gone to their friends for cash and in the current climate returning for more in 2009 is going to be difficult. So I think my focus is to get people to give time and effort to raise awareness and see if we cant get a whole set of new people to part with cash for a cure.
You have been warned!!
Monday 1 December 2008
The effects of the drugs at 9mg per day has not been dramatic. The improvements are still marginal, if there at all. It is quite unsettling for me and raises many questions about progression which I don’t really want to face at the moment. I have requested via my GP that Azilect, the alleged neuro-protective inhibitor, be added to my drugs regime. This will probably complicate matters.
Ian Kilpatrick and I went to a Cure Parkinson’s Trust event in Edinburgh. It was interesting meeting the trustees, the management and hearing Tom speak again. I get the impression they are trying to spread out into Scotland which is no bad thing. I am still questioning what my role in this quest for a cure is and Wednesday gave me more food for thought. What is undeniable, however, is the wine was rank. Two glasses was enough to give me a stinking sore head on Thursday. I didn’t need anymore brain cells killed but that paint stripper did it!
In the aftermath of the Great North Run, Gareth, my big bro, said he would run a 10k with me in 2009. As luck would have it, the Glasgow 10k for men is on his birthday. What better way to spend such an important day? He was unconvinced until I pointed out that it was also the longest day of the year so there was a decent chance he would finish in daylight.
This week sees the marriage on Ian and Sara. It is a dinner suit affair and I went to Slater’s in Glasgow to buy one. I tried on a few with labels on the cuff saying “Ted Baker” and “Paul Smith” costing ££££s. However, as I am going to wear it so infrequently I opted for the £69 version. No label on the cuff, just one inside saying “Bi-Stretch”. Sounds like a group exercise class or a form of cosmetic surgery. I shall wear my Bi-Stretch with pride!
Tuesday 9 December 2008
Ian and Sara’s wedding was amazing. Any wedding which includes a falconry display as you had your meal and a full pipe band after the speeches is pretty special. Ian has been a great supporter of WobblyWilliams.com and has roped other people into the cause. On Friday night (the Stag Night), one of those people, Willie McFall, presented me with a cheque for £2200 for the PDS raised by the Hays team who ran the Great Scottish Run. The cheque took the total over £40k for the year, a great achievement for everyone involved.
As word spreads more people want to get involved. Over the last week I have been contacted by a group of students who are taking part in a entrepreneurship project and an advertising student wanting to help. The students are going to design and develop products to sell on the website to raise funds and the advertising student is going to design adverts for next year’s events. At the wedding I broke the news about the Parkinson’s disease to a guy I hadn’t seen for a year or two. He does board level personal development work with some of the UK’s very biggest companies and next week I am sitting down with one of Glasgow’s leading businessmen to discuss the project. What did I do with my time before Parkinson’s disease came crashing in?
I do laugh more. I was talking about this to Gareth last night. About a year ago when everything seemed futile, he was concerned that our relationship would go from being one of fun to a serious affair and is much relieved it hasn’t. I think overall I laugh much more than in less wobblier times. I had lunch with Tony last week where we planned out a series of 30 second videos highlighting situations that maybe you don’t want a Parkie involved in. I roared with laughter and then relayed it to Gareth and roared some more. We start filming in the new year and will email them to our friends and, hopefully, through them, around the world.
Sunday 14 December 08
Scotland’s most famous Parkie, Margo MacDonald, has been all over the papers this week with her crusade to get a right to die bill through the Scottish Parliament. I admire what she is doing as it is obviously something she feels strongly about. And I should be pleased she is raising awareness of Parkinson’s.
Well I am not.
On a personal level, she is depressing me, unintentionally I am sure, but she is. I don’t really want to think about getting to a state where I feel the need to slope off into a darkened room and drink a toxic cocktail (which I imagine will contain Buckfast and pulped Brussels sprouts).
With regard to the awareness raising, the purpose of raising awareness is to inform people of the problems and motivate them to demand change. The change I want people to demand is for a cure for Parkinson’s through, for example, more funding for Parkinson’s disease research. The change the public will demand through Margo’s awareness raising is for the legalisation of assisted suicide. The Parkinson’s Disease Society or the Cure Parkinson’s Trust will not have raised a red cent through Margo’s activities.
If someone of Margo’s stature was fighting Parkinson’s corner then we would be much closer to a cure, making the right to die debate pointless.
Finally Margo is also putting the thought in people’s minds that people with Parkinson’s are all f*****.
Well I am not.
Far from it.
Tuesday 23 December 08
I have no “off” switch. I have eaten and drunk like a maddie for 3 weeks and boy do I feel rough. Clearly I blame the rough feeling on Parkinson’s disease and the increased shakiness to progression rather than lack of sleep and my body shouting “Enough, you dimwit”. Will I ever learn? Hopefully not.
I am getting running stuff for Christmas. A heart rate monitor with GPS (because I am a sad git who loves statistics and over analysing things, as you have probably noticed), a sleeved waterproof top (because I don’t live in Spain) and a pair of “tights”. Tights! again I say where did it all go wrong? As winter is here I have been wearing my tights in advance of the big day. As I pound the streets of Bearsden I get smirks from the guys (because I am wearing tights) and goggle eyes from the girls (because I have found a great place to store my post run banana).
I finished work on Tuesday for Christmas. We are having thirteen for dinner on the big day. My Dad, stepmother, and sister Chrissy are staying with us, with another sister staying nearby with her husband. We are having a drinks party Christmas morning and then dinner about 4pm. Late in the evening Richard (Vicky’s brother) and I will retire to the carport to play darts in our new darts shirts! We are going to World Darts Championships at Lakeside in January and want to look the part. See for yourself on the Photographs page.
Sunday 28 December 2008
Christmas was tremendous, it was very indulgent. On Christmas Eve e went to a party at a pal’s house and had a curry. A combination of excitement and the curry restricted me to about 4 hours sleep.
The girls were up at seven and delighted to find Santa had visited. I made my favourite breakfast, a Bacon Brunch from Morrison’s. Bacon Brunch is a vacuum packed ready meal of potato slices and bacon chunks. It looks foul, is totally processed and is the sort of crap I adore. It also probably explains why my brain cells are becoming less effective as the days go by!
After church we had a drinks party for sixteen, and then Vic’s family arrived for lunch. Vic was a trifle worried because I normally have the cooking of Christmas dinner planned like a military operation but this year I just ambled through it, in my more relaxed style I know have. It was fine. Mostly.
In the evening I sat and sketched out a route for Wobbly Williams Walk II, 70 mile through the Antrim Glens and along the Causeway Coast in Northern Ireland.
Boxing Day involved a trip to the theatre to see that classic Christmas Panto, The Wizard of Oz! Very good.
On Saturday I took my sister to her first Old Firm game and more significantly to her first pre- and post-old firm party at Bob’s flat. Extra large measures of Bacardi poured by the host ensure by the time you go home you have forgotten the result, and indeed that the game was ever played.
Finally, to finish the festivities, on Sunday I ran in the Down By The River 10k at Cambuslang. The weather was Baltic. You could have filmed an episode of Pingu. This was different to any 10k I had ran in before because it was for serious runners, the sort of people who wear tights. Most of the runners displayed a seamless transition between their washboard stomachs and their tights whereas I had my little turkey stuffed belly protruding out. I still looked the part. Kinda.
I set a target of breaking the hour mark which, given the quantities of festive lager I had drunk, I figured would be pretty good. I ran with Karen from work who set a target of sub 55 minutes and she took off like a gazelle. I kept up with her for 6k. Then it all went a bit pear-shaped and I started labouring (as in I sounded like I was in labour) for a couple of kilometres. Karen hung back with me, despite the foul language I was using in her direction for making me run so fast. We finished with a burst and crossed the line in 55 minutes 29 seconds, a full 37 seconds faster than my previous fastest time. I was over the moon once I had scraped myself off the pavement and stopped swearing. Such a time would put you halfway down the field in most 10k races. In this one we were third last. There were only two behind us, both non-tights wearers.
Tuesday 30 December 08
I always like to sit and have a think about the passing of the year, a wee reflection on the twelve months that have gone by. This year I don’t have to do much dredging of the grey matter because it is all written up in this blog (I knew I was doing this for a reason).
As my starting point I thought I would look back at my blog entries for this time last year to see what I thought of 2007 and what I hoped for 2008. I was quite surprised to find I was pretty silent on what had been and what was to come. My sole comment was “My pal John from Southampton arrived today for New Year, he has had a shitty year too and I am really looking forward to having a blast and saying goodbye to 2007”. I suppose at the time, three months after diagnosis, I was struggling through the long grass and could only deal with the now.
What a difference twelve months make. 2008 has been the defining year of my life. All the way through the year I have done things which previously I had only talked about; running a 10k, running a half marathon, walking the West Highland Way. I am still staggered that I finished the Great North Run, it was a great personal achievement.
The website has been a great thing too. By luck rather than good judgement Gareth and I hit on a formula which works; optimism and humour. The story of a young person being afflicted by an illness isn’t unusual, it is the website that is unusual. It is the website that has made access to the media possible and motivated so many people to get involved. The more people who are involved the more awareness is raised and the more funds for research are raised.
The West Highland Way was the undoubted highlight of my year. I relaxed, I sang, I laughed, I made new friends and became better friends with existing ones. It was brilliant.
The West Highland Way epitomised my view that having Parkinson’s is a reason to do things, not an excuse not to. Even better, other people are using my Parkinson’s as a reason to do things. Would Bob or Slim Macmillan have run a half marathon if it hadn’t been for my PD? Would Tony or Fiona have walked the West Highland Way? Would Eddie have done any exercise at all? It is great therapy for me to know people are getting something out of my situation. I find it hard to express my gratitude to their faces without getting all emotional so I don’t! But everyone has my deepest thanks, your actions do me the power of good.
Of course there have been dark moments, the blog entries from the first three to four months of the year are thin on optimism and they were bleak times. As the year ends, I feel I have come to terms with my predicament and I have a better idea of where I am headed. It doesn’t fill me with fear the way it did.
Who knows what 2009 will bring? Wearing my Wobbly Williams hat I hope we can get over 1000 people out running, walking and biking sporting Mr Jelly in some form or other. Achieving that will raise awareness higher and raise more funds for a research.
On a personal level if I finish 2009 in the same frame of mind that I have finished 2008 then I will be a happy man. I hope to get my golf handicap back below 20 and in my wildest dreams I will run a sub-50 minute 10k and run the whole of the New York City marathon. Hmmmm.
Have a very, very Happy New Year.